Nurses' responses to expert patients: the rhetoric and reality of self-management in long-term conditions: a grounded theory study

Abstract

Background: Against the backdrop in the western world of increasing prevalence of chronic disease, active and informed patients and a policy emphasis on self-management, this English study explored health professionals' responses to expert patients.

Objectives: To:

Design: A grounded theory approach was utilised with two concurrent data strands.

Setting: A relatively affluent English county including community, primary and secondary care settings.

Participants: Via purposeful and theoretical sampling 100 health professionals (nurses, doctors, physiotherapists) and 100 adults affected by chronic disease participated.

Methods: Focus groups, interviews and observation.

Results: Nurses were found to be most anxious about expert patients when compared to other professionals, which appeared to be linked with a lack of professional confidence and unfounded fears regarding litigation. However, nurse specialists often provided a negative case for this. As a whole, nurses were most able to meet the emotional needs of patients, but apart from nurse specialists did not articulate this as a skill.

Conclusion: Apart from nurse specialists the majority of nurses appeared limited in appropriately facilitating self-management. It is suggested that this is linked to an ongoing nursing culture of patient as passive, an over-emphasis on empirical knowledge and a feeling of vulnerability on the nurses' part towards expert patients. The findings also indicate a rhetoric rather than reality of autonomous nursing roles within the chronic disease management agenda.